Wednesday, October 28, 2009

Whack-A-Mole Relief Pitcher

I coached Conner's baseball team for one year and it wasn't as enjoyable as I thought. I had a few of those kids who didn't really care for playing much and I was never sure how to get them motivated. I think we ended up about .500 so obviously I wasn't very successful at motivating them. I was probably about a Lee Elia/Jim Rigglemen level. Nothing special.

One thing I did end up doing well was I knew when to change pitchers. I didn't let a kid walk ten like you see on the little league ball fields all too often. As they say in baseball, I had a quick hook. 

After days of deliberations, I'm bringing out the hook again. This time it's MD Anderson.  It still is the greatest, one-bad-motha cancer fighting institution. But I need something different now. 

My world is now that of the experimental drug. After days of thought, I realized that no matter how hard I try, I'll never quite understand all of the different drugs out there. I need a doctor who can help me navigate this new world. My doc at MD Anderson is certainly a leader in this area. But as I mentioned before, it's in the research part and not the people part. People are a big inconvenience for him. 

So my reliever is a fella out of New York named Owen O'Connor. Dr. O is highly recommended by other patients afflicted with what I have. But most importantly, these patients have one thing in common and one thing that I badly want--they have a different attitude towards this cancer. They think this is a disease and no more. Dr. O's patients believe that you can go from treatment to treatment playing Whack-A-Mole with lymph nodes for quite some time. Even years. Try a treatment. See if that knocks any nodes to normal size. Then when it stops, go to another treatment. Eventually, yes, you run out of treatments. But I'll take a couple of years. 

Now, I haven't told anyone besides my beautiful wife. I haven't even met Dr. O. although I have an appointment with him next week. So things could change. But I doubt it. I have a good feel for relievers.

Monday, October 26, 2009

First They Take the Funny

Last week, the doctor called me over the phone and told me about my test results. Today, I got to see them in writing. It is very difficult to read on paper that you are dieing. 

This report is bad. I have a cluster of nodes in my neck that are cancerous. And I have one lymph node in my chest that's 2 cm big and cancerous. I have a biopsy on Thursday to confirm the test results. There's no shot that it's not.

Ever since I met my beautiful wife Sherri, I always loved it when she sang. She's happy when she sings and if people get past the annoying bastardization of famous rock songs, you become happy listening to her sing too. Every day, the house is filled with her singing some song she just heard on the radio. It's almost always a catchy boy band tune or something from the eighties. Today she sang Who Are You from the Who only she did it in her way, a snappy version of Who Are You. But it never matters.  And now I can't stop thinking that one day, the singing will stop.

Somebody prove to me that there is a just and kind God. I can't do it. We were a very happy family and God fucked it all up. Even if I break all odds and live longer than the one year they give me, how much longer will I go? Will I ever be able to walk one of my girls down the aisle in her wedding? Will I be able to help my son start his own business? Will I take my wife to Australia? 

The answer, of course, is no. Nobody gets those years. People talk about waiting for that miracle drug to come along but that's a complete fallacy. It's Hollywood. Drugs take decades to develop, years before any patient could ever put it into their veins. And so we patients know what's out there awaiting us. And there's no miracle drug. 

At this hour I can't sleep.  My b symptoms have begun again. That means that this cancer will soon be going all Midevil on my body. I can already start to feel it. The pains and fatigue are here. I already have that look. I weigh in at 165 Ibs. Before I had cancer I was a buff 190.

Now it is 1:30 am and you all are asleep. Good for you all. I took a sleeping pill but it doesn't work. I took two benedryl and still nothing. I lay in bed and think of how I failed my family. In the end, I didn't provide for them. My death will cause them pain and a feeling of emptiness their whole lives.  The pain of this burden is more immense every day. Cancer is eating up a part of me on the inside. The pain of screwing up my family forever is eating the rest.

Sometime later I'll sleep and that's the best time of my day. In my dreams I am normal. I laugh. I tell jokes. There's no b symptoms. My wife sings.

Wednesday, October 21, 2009

Entering the Land of I Don't Know

This morning I woke up and realized that I was way wrong. The node in my neck is getting bigger. The night before I wrote on my blog that I thought it wasn't because it wasn't growing outward. But I felt this morning that it is growing sideways. It's butting up against my throat now. 

By the afternoon the doctor called and told me the Morning Me was right and the Last Night Me was way wrong. The tests show the cancer is back in two sides of my neck. 

What that means is I've entered into the Land of I Don't Know. This is a place where nobody really has the answers and you're on your own to find them. What medicine should I try? "Well, I don't know." Will it work? "Well that depends." How will I react to this treatment? "Well, we're not really sure." 

The only job available in the Land of I Don't Know is the job of staying alive and getting treatment. And this job is hard. I have to make sure all the paperwork is shuttled from hospital to hospital. I have to get shuttled from hospital to hospital. And I have to, in a sense, be my own doctor. From here on out, doctors only make suggestions because they just don't know anything works. And because there aren't a lot of Hodgkin's relapsers alive out there, there aren't that many doctors who know how to treat them.

From here on out I'll be getting traditional chemo treatments along with experimental treatments. The key is to find something that works for a while. When that runs out, then I need to find something else. There are promising treatments out there but nothing that's a wonder drug. I'll have to fight through side effects and hope drugs take. 

By now you may be asking how long I have. I can tell you that I feel good. My neck hurts but that's about it. The doctor told me it is a matter of years and not months. 

By far the bravest citizen in this Land is my wife. What do I do about my wife? What do I tell her? How do I keep making her happy? What kind of future can we have? What should we both tell the kids? Welcome to the Land of I Don't Know. 

Monday, October 19, 2009

Hey buddy can you spare $76,000?

After two months of fighting, it has been decided that my insurance company will not pay for my proton radiation treatment. Those of you tea baggers who don't want government run health care because you're afraid decisions will be made by a bureaucrat instead of a doctor? Well, the truth is, decisions already are made by bureaucrats instead of your doctor. You just don't know it. 

My doctor is the leader in the world in radiation. He just gave a talk in Japan about it. Americans don't give talks to the Japanese about technology unless they really know their shit. He knows his shit. But the insurance company knows better, apparently. 

There are very few avenues of appeal left. It looks like I'm going to pay by weeks end. I owe $76,000. The good news is almost half of that is covered by the Herlehy Helper party. Thank you for getting drunk and bidding on cool stuff. I'll just have to come up with the rest. 

The most naive post I ever wrote

I go in for two tests tomorrow. The doc bets the Monster is back. As Marge said in the movie Fargo, "I'm going to have to disagree with your police work there Lou." Now in doing this I am exposing myself as yet another in a long line of eternally optimistic cancer patients. Some may even say naive. And I will feel embarrassed if this does come to pass and the Monster shows up. But I have my reasons to be more optimistic than my doc. 

In fact, I'm less worried about the node in my neck than about any other node in my body, even though we're doing the tests to see about the node in my neck. Why? Well, it was something that someone in my online Hodge message board brought up. I sent in a message asking for moral support after my ill-fated trip to the doc. Support came poring in. Then one fella left this one simple sentence message saying that the doc could be wrong. It could be scar tissue. 

And well, he's right. It could be scar tissue. That explains a lot. The node is bigger, shaped oddly and is as hard as a marble, just like a cancerous node. But it hasn't really grown much in a month. Last time I relapsed, in one month I went from two tiny nodes to a 10 cm ball in my chest. 

Also, most relapses aren't so nice. Usually, people get sick. They run a temp, get itchy all over and have rashes. I got sick a couple of weeks ago but that was just the usual sick. Since then, I've felt great. I mean, I'm feeling how you normal people feel and I'm really loving it. Man you normal people have it good. 

And then there's the Herlehy Scan. Yes, I made up my own test. It involves alcohol (go figure) but it does have some science behind it. Ya see, the Hodge is the only type of cancer that has a violent reaction to alcohol. Within the first couple of sips you will get sharp pains in the cancerous area. That was the clincher the last time I relapsed. On New Year's Eve, I knew the Monster had come for me and I went into the hospital the next day. 

This time I've had a couple of beers here two different times with the express purpose of seeing how and where I'd react. And no reaction in my neck. Nothing. The Herlehy Scan came up negative in the neck area. 

Of course, the Herlehy Scan came up positive on my right side. And that's why I'm more worried about other areas of my body. I have to score a 100% here. More than Ace these two tests. I don't think I've ever scored 100% on two tests. Anyone who's known me in high school or college would agree that it's a mighty high bar for me. 

So there it is. My pre-scan naive optimism complete with rationale. By doing this, I set myself up for a bigger fall if it doesn't turn out like I expected. 

What do you do all day? I make phone calls and faxes.

Say what you want about the advertising industry but they don't screw up nearly as much. And when they do, people do it with a lot of enthusiasm and plenty of fake smiles. 

So I needed to transfer the scans of tests from MD Anderson to Northwestern in time for my new tests tomorrow. Just a CD in the mail. No biggie. Well, last week I called MDA. Then I emailed three times. Then I faxed. I thought it was taken care of. After a couple of days, I thought I should call to check. They had no such orders. 

So then I had to call and fax again this time to someone else in a completely different department. This time they had it. I needed it Fed Exed to arrive in time for the tests. So they sent it Fed Ex. Five day Fed Ex. I didn't even know Fed Ex had a five day service. Why would someone send something Fed Ex if they're going to use a five day service any way? Technically according to them, it was my fault since in my fax I asked for it to be Fed Exed. They just assume it's five day Fed Ex like that's normal. I didn't know that until I decided to check on Friday. 

So I called Fed Ex to try to hurry the package along. That was fun. After being on hold for twenty minutes, they just hung up on me. Then I called back and told the person I was on hold but got hung up on and the Fed Ex person didn't believe me. Really. She said, "No you weren't." Huh? How does she know this? 

After all of this, I still couldn't get Fed Ex to do anything since I was neither the sender or the receiver. Even though I was doing nothing to the package but hurrying it up and I offered to pay for the service, Fed Ex just couldn't do it.

So I called Marco back at MD Anderson. It was late on Friday but Marco said he'd get on it. I checked on Monday and indeed Marco got on it. He did it. He got Fed Ex to deliver it. And it was delivered.

So I called Northwestern and asked for the person who was supposed to receive it. Oh, well, Michelle isn't in on Mondays. Ah, okay. Can someone else make sure it gets into the right hands? Um, do you know what you're asking for, sir? Do you realize how difficult that endeavor would be? But I got it done. Now all I have to do is make sure we're set to take the tests on Tuesday. We are set to take the tests, aren't we? And what about my medical records? You ave those, don't you? No, you don't. You never got my fax? Sure, I'll fax that over again. 

Well, actually, no. I was told that both my tests would be Tuesday and one right after another. But that was last week. This week things changed. Now I take one test Tuesday and one test Thursday even though they've almost always been done in conjunction. And by the way, thanks for telling me. After a couple more phone calls, lots more pleading and half a day, I got my tests on the same day. 

Now, believe it or not, I have to do everything in reverse for the results. I have to go through Northwestern and send everything back to MD Anderson. So expect a blog about that soon.

And as for the results, well, if everything holds then this will all be for nothing, meaning it will all be one big mistake. It would be the nicest mistake I've ever experienced.

On the other hand, if the scans show that the cancer is back, I will be experiencing this and other similar run-arounds on a daily basis. To get further treatment, I have to search out and then qualify for experimental drugs. That means getting all the information to the hospitals and taking all the same tests each time I'm looking into getting a new drug. It's a full time job and I'm on my own. Doctors won't say, "Okay, you now need to take this drug. I'll call over there and get you in." That's because there is no drug to take that is definitely effective. It's more like, "You want to take that drug? Sure, we'll try that. Why not? Couldn't hurt. Make sure you get those documents in. Have fun with the bone marrow biopsy." 

Tuesday, October 13, 2009

Is this a relapse? The doc bets yes.

Adrienne was a 21 year old Hodge survivor. Man was she ever. She was legendary with the online Hodge community. If you had a problem, you just hoped Adrienne would help you on it and she almost always did. A person asked about a doctor in some town. Adrienne had a list along with some commentary on each. A person asked about a treatment, Adrienne could tell you what to expect in a language the docs couldn't tell you. Her mom and her wrote this one piece titled, "How you know you relapsed." It should be shown to every oncological intern. It was a work of art. I have just that page bookmarked. 

When I was looking into the pros and cons of my stem cell transplant, I asked for Adrienne's help and she came through. Both her and her mom offered advice, asked me questions and made me think. She left me with her cell phone number and her class schedule so I would know the best time to reach her. I never called. I was too intimidated. It would be like having Michael Jordan's personal cell phone number. 

Adrienne spent most of her life with Hodgkin's. She had it since she was nine. Imagine fighting something off since the age of nine. But she did it and with style, never letting the disease control the way she thought about life.

A couple of weeks ago, Adrienne passed away. She died like she lived giving the disease one hell of a tussle. She's the benchmark. She went twelve years. I don't think anyone can beat that. I'd love to be wrong. I need to be wrong. It seems as though that could be my max as well. 

I had been having a hard time with a couple lymph nodes in my groin and one in my neck. Because I'm no longer in Houston, the team at MD Anderson suggested I get a doctor here to look over any kind of thing like this. Today I went to see him. Although he doesn't have any scientific data and is only making a judgement based on feeling a node, noticing how large it is and going through my history, his best bet at this point is that I have cancer once again. I go in for scans and tests one week from Thursday. I'll know for sure then. 

When a soldier gets killed in battle, many of the other soldiers don't immediately think, "Poor George. I loved that guy." Instead, they usually think, "That was a close one. When is it going to be my turn?" Adrienne went down. But I think I just got shot, too.